I am writing this because I am really nervous about seeing the new doctor tomorrow. I have seen neurologists before but this is such a weird situation I am nervous! I think my biggest fear is that they will not help me either and I will continue to suffer like I have been. I am only seeing him because my pain doctor won't even try to do anything else until I see a neuro. She said at my last appointment there is nothing else she can do even though it is apparent on my x-rays my leads have moved again! It really makes me mad because I have continued getting worse since September and I cannot be reprogrammed anymore because of the problem! So this means I get more pain when I turn it up because it is hitting the dura instead of where it is supposed to hit.It is also very hard to even charge and the pain and problems have even led me to have problems with my movement (especially the right leg). She wants me to go because of the numbness I get sometimes (pretty often) in my legs and she said that is a separate issue then the one for my stim. She also said that since she already did a revision she can't do anymore surgeries for me, like I hit my limit of surgeries which sounds very weird and it does not help that she is very condescending about the whole thing. The neurosurgeon already said it is RSD so this whole thing is ridiculous. All I know is if and when I actually get this fixed I am going for the paddles kind of surgery and I never even knew that existed but my stim rep said that the leads will be better held in place. I am also going to try to get a handicapped parking permit because I cannot do all that walking on campus even with my walker I get in horrible pain I am so fed up with all this! Also, she said that the neurologist might want to take my stim out so they can do a MRI I guess if that scenario happens at least they would have to fix it because they would put it back in afterward. I guess I will just have to wait and see what he says I just really hope this is a productive appointment! Thanks for listening.

sincerely
tara

Prayin that all will be well.
Mark56

Tara,
Prayin all goes well tommorrow for you and you can get the relief you need and the things taken care of. I do not understand why your pain doc has reached the max number of revisions to yours. I had mine revised 3 times and then had the battery removed for a while to see if i still want it or if i want the leads removed. Hope you can get some answers and relief. Good Luck!
Angela

That point about max revisions troubled me as well. It seems that if a patient had a medically necessary and treatable condition, then care would be offered. Confusing to me. Thank you for posting your history for Tara, Angela!!

Mark56

You know, instead of having a stimulator put back in, why not have a morhine PUMP put in???? I'm sure you'd get better pain relief ~ the morphine doesn't go to your head ~ it just bathes the nerves in morphine so you aren't "loopy" all the time. Many times your oral meds are reduced too, but you still have to take some.

I'd surely go for the pump rather than the stimulator. I had the SCS at one time, but had to have it taken out due to problems. then I had the trial for the pump, but because I'm small they said i couldn't have it because the pump was too big for me. At least it was at that time ~ perhaps the pumps are smaller now, I don't know. But ask your doctor about it. It gave ME total relief, and i'm not kidding!!! i didn't have any pain at all during my trial, and I have SEVERE lumbar pain.

Best of luck and God bless. Hugs, Lee

Lee- You bring tears to my eyes, not being able to have the pump for reasons you shared, AND willing nevertheless to share your trial experience with Tara in case that could help her.
Blessings on you,
Mark56

Just a few thoughts I had as I read your post.

First, my pain mgmt. dr. who is going to put my SCS's in next week said that if I required paddles (rather than leads) he would be sending me to a neurologist as it can be a tricky operation depending upon what's going on inside one, nerve-wise. Maybe she feels that your situation may be one that is above her expertise and that her saying she's done as many surgeries on you as she can is implying that.

Second, she may be suspecting that you have a separate problem with the legs going numb and wants you to get checked out to make sure, and get the help for it if it does indeed turn out to be the case. In addition to the back/neck problems for which I'm getting the SCS's, I also have other health issues. One is a connective tissue disease, and the only person that has been able to help me with that has been a neurosurgeon. Not saying he's "cured" me, but he did do some small, outpatient procedures on certain nerves that helped me get some relief that I don't think the SCS would have helped.

Third, and I say this hoping that I am very, very wrong...maybe you're like me and have many different health issues going on. I see an immunologist, a neurologist, a specialized ENT surgeon as well as my pain mgmt. dr. (who is an ortho.). So while her bedside manner may be lacking, she may be thinking that you have other issues that either complicate the ability of the SCS to work properly or you have other issues, period, that need to be addressed.

I pray for you that your visit to your new neurologist is very helpful, and that he/she turns out to be a compassionate person with a good bedside manner. Hugs

The new doctor was really nice but it was a hard appointment because my pain doctor did not send any records to him even though they are the ones that referred me! So, it was kind of weird because I had to tell him all the basic stuff. He said it sounds like I might have a pinched nerve so I have to have testing done. He scheduled me to have an EMG? I think its called that its where they put the needles in your leg and the electrodes to test the nerves. He got me in for Friday. He also said that this will be our first step (he does not want to take my SCS out unless absolutely necessary so that is good. He said after the test then he will probably do a cat scan and (if need be an MRI but thats the last resort) see what that shows, of course it would of been a lot better if my records had been there! Since my pain doctor office is notorious for losing my phone number and not following through on anything my husband and I just went up there too and told them I need to get my records and I am also trying to get a handicapped parking permit so that I can also get a handicapped permit for school too because I really REALLY need one since campus is big and it would help us out. The pain doctor office is supposed to call me back about my records after my doctor gets in tomorrow so we will see. I am glad that the neuro is nice and he made sure to get me in for that test sooner because I would have had to wait a whole month and I just can't keep going like this.

"fionabThird, and I say this hoping that I am very, very wrong...maybe you're like me and have many different health issues going on. I see an immunologist, a neurologist, a specialized ENT surgeon as well as my pain mgmt. dr. (who is an ortho.). So while her bedside manner may be lacking, she may be thinking that you have other issues that either complicate the ability of the SCS to work properly or you have other issues, period, that need to be addressed."

fionab, I do have many health problems and I have many specialists and all of them have told me that the pain is what the stimulator should be covering especially since it has helped me before. I have an Internist, Urologist, Gastro specialist, blood specialist, Gyn, endocrinologist, pain doctor, heart specialist and now neurologist so I am used to having complicated medical problems. The SCS (when it is working right) did help me with pain control even though I have all that other stuff wrong with me. There is definitely a problem with my leads and she is not addressing it so after all this deal with the neuro is over I am going to have to get my stim fixed so that it will help me again. And even if I do get it fixed but they can't fix the numbness I will be with my walker and wheelchair and that would be fine because I would be out of pain again.

Leesa "I'd surely go for the pump rather than the stimulator. I had the SCS at one time, but had to have it taken out due to problems. then I had the trial for the pump, but because I'm small they said i couldn't have it because the pump was too big for me. At least it was at that time ~ perhaps the pumps are smaller now, I don't know. But ask your doctor about it. It gave ME total relief, and i'm not kidding!!! i didn't have any pain at all during my trial, and I have SEVERE lumbar pain."
Leesa, thank you for sharing your experience with me and I am really sorry that you were not able to keep the pain pump I really do not want to go that route though because I want to be off pain meds for good which is what happened when I was using my stim when it was helping. I want to keep my stim just get it fixed because it was like a miracle for me and it did get me out of pain and I was not using the walker or wheel chair and not on pain medicines. Thank you for sharing though I appreciate it!

Thank you so much for everyone's replies and support! This site has really been a lifesaver for me in dealing with this and not feeling so alone! Mark56, abrown176 (also thank you for sharing your experience with me too), fionab, and Leesa

I am not aware of your full situation, but I do wish you well on your appointment today. New doctors make me very nervous too. Especially because you have to explain your full situation in a short amount of time and when your file happens to look like a book they often skim through it; making the full picture and an accurate response rare. When they happen to add in a negative or condesending attitude it's no wonder the whole experience can make a person nervous. But here's to wishing today proved productive

Glad to hear your neurosurgeon is getting you in for testing, and soon at that. That's a good sign that your dr. is taking this seriously. Good luck on your EMG!